one couple, two cats, thousands of miles, the journey through infertility, a high risk pregnancy, and finally, a baby girl

Friday, August 21, 2009

broken

My spirit and my body are broken.

Yesterday I had typed out a long, whiny blog post (see below) about the faults I had with the new clinic. For the most part, I completely love the clinic we chose here. I was just confused by the number of reproductive endocrinologists (REs) involved in my case. There was RE#1, the RE we chose and really like. Then there was RE#2 who preformed the SIS and discussed the autoimmune panel results that had come back from France, then there was RE#3, who called yesterday.

RE#3 called to discuss my autoimmune profile in detail. He is sub, sub specialized in reproductive immunology and really knows his stuff. We spoke about the two autoimmune issues that RE#2 had pointed out. He agreed with RE#1 and RE#2 that I would need to be on Heparin, Lovenox, or Clexane, plus the baby aspirin, plus the steroids, plus all of the other “regular” IVF meds. At that point, I still wasn’t quite sure why he was consulted because these were issues that had been dealt with. When I asked him about it he said that the REs consult with him when an autoimmune profile comes in that is “troubling”. He also said that it never hurts to have another pair of eyes look at a case and make suggestions, which I completely agree with. He told me that according to my chart, I’m still listed as a patient of RE#1, good to hear.

Then we got down to business, the “reason” for the call. There it was, the test at the bottom of the page, the test that didn’t stand out on the paper, the test that I had missed. Anti Nuclear Antibodies. Anything over 320 is considered a significant increase, I’m 640.

This means a number of things:-blood work has to be sent to Chicago (one of only three labs in the world that perform this type of profile)

-the results of the “Chicago labs” will determine whether we do intralipid therapy or IVIG therapy.

-the cost of doing this is huge and if it is determined that we have to to IVIG therapy (RE#3 was leaning that way), we could very well be done :( We are already paying for everything out of pocket, I just don’t know how we could swing a regular IVF cycle, plus the extra meds, plus the extra testing; the cost of each IVIG treatment is stomach turning.

RE#3 had reviewed my records and thoroughly agreed with the seven other REs we’ve dealt with, it’s most likely that my autoimmune issues caused the miscarriage of the triplets. His recommendation was to not even try another IVF without the intralipid or IVIG therapy because it would likely just result in another loss. After doing some research and contacting yet more experts, I agree with him. According to one RE, the IVF success rates in women with my history are 64% with IVIG therapy, 4% without.

So the next step is “Chicago labs” as they are called here. They are only done once a week and then put on a plane for the U.S. that afternoon. I’ve made the appointment and requested our favorite IVF nurse if she’s available. I’m feeling rather broken.

Before you read my whiny post (written yesterday) let me just say, ALL of the staff, physicians, and nurses we’ve dealt with at the wonderful clinic have been nothing but kind, gentle, professional, and have provided the highest level of care, couldn’t be happier. And now I understand some of the things that were unclear when I typed the following post.

August 20I was “that” patient yesterday and I don’t want to be “that’ patient

In Belarus, I never called my RE or any of his Russian speaking nurses. Even though I had his personal cell phone number, not one phone call. I had no reason to call. The IVF protocol was simple, I was familiar with the medications that were being used (U.S. and U.K. brands), and I was VERY well monitored, like every other day for ultrasounds, type of well monitored. I could ask him questions or discuss issues when I saw him.

Things are a little, okay a lot, different here and I’m not sure I like it. We chose to go with a certain doctor based on several factors, so we made an appointment with him. My husband and I were both very impressed with him after our first meeting and really like his IVF nurse. Last Thursday I had the SIS procedure and a different RE performed it, okay fine, it was just a saline scan. Well here I sit waiting for yet another RE to call me to discuss the autoimmune issues.

The first RE had put together a great plan for the next IVF, changing things a bit from what was done in Minsk, adding extra meds; we were all comfortable with it, I thought. Then the IVF nurse named a few different medications, fine, I figured that they would discuss it and let me know.

When I had the SIS, the second RE named yet more medications. After calling the IVF nurse yesterday for a little clarity (see I was “that” patient), she gave me a list of 13, yes 13 medications that had been decided on, and that’s not counting the baby aspirin, intralipid iv therapy, or birth control pills (more on that below). I don’t know who decided on the meds and in my shock of hearing and subsequently writing down the names of the drugs, forgot to ask.

And then there’s the birth control pill issue. From what I’ve heard/ read, it’s fairly common in the U.S. to be prescribed birth control pills at the beginning of an IVF cycle; I was not on them in Minsk. When I asked about it at the first appointment here, I was told that I likely would NOT be put on them. Now I’m being mailed a prescription for birth control pills. What??

The final issue, which I haven’t addressed with anyone yet, is that this clinic doesn’t perform routine betas (pregnancy blood test) after IVF cycles. Ladies with infertility experience, you may now pick your jaws up off the floor; I had a similar reaction when I was told. I have NEVER heard of a clinic not doing a beta, or several, after IVF, never, never, never. I’m already having nightmares about this. Do I beg and plead with my RE, do I ask my GP to do it? Meep.

I do not want to be “that” patient. Give me a black and white plan, send me out the door, I’ll do some research and if there is a problem, I’ll be in touch. Otherwise I’m perfectly comfortable with minimal contact. I’m really hoping for some clarity when the RE calls today. ::sigh::

This was my venting post and now I will relax. I really do like the clinic and I’ve had EXCELLENT care there. A little less confusion would be nice, but overall I’m very happy.

7 comments:

Oh, wow that is not good news to be delivered. I'm very sorry to hear that.

I have to say (despite them not doing betas) I'm pretty impressed with the thoroughness of your clinic. I'd never even heard of that complication before.

I don't want to sound like an ass here, but the way the meds and costs are piling up, it makes using a gestational carrier seem like something to consider. (But I didn't say that if you are not there yet.)

I hope the results of the chicago labs give some better news, I'm sure you could use it right now.

I came over from LFCA. I had testing done that might have led to a recommendation for IVIg and then didn't. I was, as you'd imagine, greatly relieved. I'm so sorry you're now staring this in the face. I have no idea how I'd have dealt with it; it's a scary prospect. I hope your results turn out as mine did, but either way I hope you find a way to a healthy pregnancy and the family you are seeking to build.

Well, all I have to say is that you are the patient and you are in charge. I know that IVIG is prohibitively expensive (I have elevated ANA's, but that's my only issue and was solved with Heparin and baby aspirin). So, I would take your notes, and request a consult with RE#s 1, 2, and 3, and have them explain to you, step by step, each medication and its necessity before you start ingesting all of this stuff.

I also had my bloodwork sent to Chicago - and had to have a redraw because they forgot to send it in the correct Fedex shipment. Gotta love it! Here's to no additional autoimmune problems!